Keeping in touch with the theme of song titles; as Bon Jovi sang Its my life it’s now or never, I ain’t going to live forever, I just want to live while I’am alive. Well I can say both John and I are almost back on track. We have just returned from latest trip to Spain and I did the final cycling challenge that I set myself back in the dark days of chemo radiotherapy.
We cycled from sea level over a mountain down to sea level and back up over the mountain down to sea level. Total of 66 kilometres with a stop for lunch so definitely living our life’s.
I am now November 2019,15 months post radiotherapy and still have periods of dry mouth and most days a quick 20 minute power nap.
Whats new: I am eating better, chicken has finally appeared on the menu which does help. I still can’t eat chicken breast but leg wing or thigh meat is ok, better with a gravy or sauce. Curries, chilli or anything spicy is still a step too far for my delicate mouth. Once again fresh mince no matter how fine, no matter which meat beef, pork, lamb or turkey still sticks, but anything processed like lasagne is perfectly fine, strange but true.
I have met and been in touch via my blog, Cancer U.K. or Macmillan sites lots of new friends and we all have our own idiosyncrasies so if you are reading this don’t think everything that I’ve been through will apply to you, some will and some won’t. I just hope I can continue to inspire fellow sufferers. Please don’t be afraid, I am a true wimp and if I can do it anyone can. I still repeat please keep off Dr Google the facts on there are not regulated and will scare you. Positive mental attitude got me through it and am sure it will help you.
A typical day for me if we are away is:
Breakfast usually porridge, fruit juice, herbal tea.
Cycle or Walk a few hours neither if which I could do much of a year ago now usually cycle at least 30 km or walk 10 km.
Lunch either tapas or if in and mouth feeling ok crackers and cheese!Definitely not eating those a year ago. When at home soup or scrambled eggs on toast.
Afternoons if away chill out and read, if at home try and garden plus do boring things housework included.
Tea again pretty boring but beats Ensures (lol) Fish, lamb (my favourite), pork usually with roast vegetables potatoes or lasagna. Rice is still beyond my palate.
Snacks very rare, I can manage a few plain crisps, a little chocolate, if I have a biscuit I must dunk in coffee.
Oral care is still a big part of my day. I can now use an electric toothbrush but still have my trusty curaprox ones at hand. I have been told duraphat toothpaste will be the only one I will be able to use for ever. Bioxtra mouthwash have tried others but all still too strong, plus inter dental toothbrushes to get any waste food from in between my teeth. I am on 3 monthly ENT appointments and visit my dentist every 3 months, both are very happy with how I am progressing.
I also pay privately for acupuncture for dry mouth, is it worth it? I think it is but you have to believe in alternative therapies.
Not everything is rosy.
It’s frustrating how one day or one week I can eat things perfectly fine then lo and behold the next week the same things just won’t go down! Our shopping bill has increased as some days I have to throw food away and cook something else. Likewise my body thermostat can’t cope with the cold as it used to, thankfully I can cope with temperatures comfortably up to 35 degrees. So once again our heating bills have increased. Ok it’s a small price to pay to be alive, but it’s all the little hidden things that soon mount up.
Loss of my uvulva.
For those who missed that in an earlier blog I didn’t discover until a year post treatment that mine had shrunk to a stump, as it accounted for producing copious amounts of serous thin saliva which I won’t ever regain. All I can do is try and encourage my remaining saliva glands to make more. Hence the copious amounts of water I still consume.
Explanation of what the Uvulva does.
Function: During swallowing, the soft palate and the uvulva move together to close off the nasopharynx and prevent food from entering the nasal cavity. It also produces an abundant amount of thin saliva which serves to keep the throat lubricated. It has a function in speech as well, so I will never be able to roll my rrrrrs, no big loss.There is one plus point I can never keep John awake as I can no longer snore ! However John says I still make noises which keep him awake.
When I reflect back to this time last year I have come a long long way eating wise plus I can enjoy a cup of coffee now. Personally I haven’t had the inclination to try alcohol, I was never a big drinker so no loss there. Some of the people who have been through treatment with me are now able to enjoy a drink every now and then.
Nighttime: Now I regularly get over 7 hours solid sleep, I still use 1/2 a xyimelts every night; (The mouth ulcer company ) online they really do work for me, yes you need some saliva for them to do so.
Medication: Now i take one omaprozole for acid reflux my usual blood pressure tablets, plus the occasional paracetamol.
To anyone starting this treatment it’s hard, recovery time varies, not one person who has been in contact with me felt anything like normal in the 2 weeks that all the consultants seem to advocate. But we all get there, some just take longer than others. I was lucky John sort of bullied me into our first trip back to Spain in October 2018, which I admit wasn’t easy but it did do me a world of good, leaving the bubble of my secure home environment.
My hospital visits are for the next 2 years every 3 months or so, the pressures on our NHS are such that sometimes I have to go a few weeks longer. A question that a lot of people ask me is do I get anxious before each appointment. I reply NO from day 1 of meeting Dr Sen. My oncologist I had every confidence that the treatment would work and the cancer would go and I still carry that attitude with me. People say to look at me now they would never know what I went through last year. The only onward difference is I go everywhere with my water bottle, and if you look closely at my neck where the enlarged lymph node was the telangiectasia is visible. Dr Sen did warn me that I would have a permanent reminder of him every time I looked in the mirror. It doesn’t bother me in the slightest, I know a few people stare and wonder what the marks are, so I tell them !
Ps. still no teenage snogs, everything else back to normal. Maybe I will get one for Christmas! Better look for some mistletoe.